New to this and looking for friends who understand...

[amanda55]

Hello everyone.

I just found these forums today, and I am so glad I did. Two days before Halloween this year my father was diagnosed with ALS, and I think my world stopped. My father just turned 58 in August and has always been so healthy. I myself am only 23 years old. I got married two years ago, and just had a baby in May. My father started showing symptoms shortly after my son was born.

My mother is a mess and me and my husband are moving home to help take care of my dad and support my mom through all this. I think the first two months of this I was just numb to everything. I helped my younger brother process all of this, cried a little, and decided I wanted to make the most of the time we had left. Then several days ago, its as though my whole world has fallen apart. My stomach is constantly turning and tears are always in my eyes.

The worst part is, the one person I always turn to during times like these, the one person I always want advice from...is the one person I am loosing. It's almost too much to bear sometimes. I am so grateful for the time we have left, and that we get this precious time, however short it is, to say everything we want to say and absorb as much as we can.

He is deteriorating so fast, and I have so many questions. I will be a primary caregiver once we move home this weekend and I am so glad I found this board and have all of you.

 

[MtPockets]

We are so glad you found the forum also, but sorry for the reason you had to look us up. You are among friends here. Feel free to use the search icon for things or just jump in and ask questions or tell us more about yourself.
I am a grandfather of 16 grandchildren, age 62, with 4 children myself. I know this ALS has affected my family far beyond what we ever dreamed. I was diagnosed May 11, 2006 with Limb Onset ALS, and lost the use of my legs. I live in a wheelchair during the day. I hope by sharing some of my symptoms, you can identify with what I am going through.

Welcome to our family of the forum all new members.
Happy New Year

 

[Al]

Welcome Amanda. Glad you found us and hope we can help.

AL.

 

[joelc]

Hi Amanda, welcome to our family! Sorry you have to be here, but this a great place where you will find answers and support.

Please don't automatically assume ALS is a death sentence, if your dad is willing to endorse technology he could live a long time yet! I have had ALS for 4 years now and am in a wheelchair, have a feeding tube and a tracheostomy and vent. Thankfully I can still talk quite well, but there are devices that can talk for you when that time comes. I plan on being around for at least the next 20 years.
I have a fantastic life and ALS does not stop me from doing anything I want.
Bless you for being there for your dad and being willing to help.

Please feel free to use the search feature to find answers to your questions, or just ask.

 

[brendapals]

Welcome Amanda,
You've found a great bunch of folks that will give you tremendous support!

I was diagnosed 7 months ago with bulbar onset ALS, I'm 48, mother of 3 boys, wife to the oldest "boy" in my life!

The first couple of months was pretty rough, but as many people will tell you, every ALS patient is like a snowflake, no two alike.
personally, I'm betting I have the ALS with the 30yr warranty! I tend to be the bargain shopper, so you know, the longer the term, the cheaper the payment!:lol::lol::lol:

A good sense of humor goes a long way, trust me on that one.
Take good care, and ask away,
-brenda

 

[LauraW]

Hi, Amanda. I totally understand what you are going through. My mom was diagnosed in July but she has had symptoms for much longer. My mom has always been my rock too. But amazingly, some wonderful things have occured as a result of her diagnosis. Her spirit is definitely healthy and she is so apreciative for evrything and everyone in her life. She has always ben a warm, caring person but did not always express her feelings verbally. And how ironic, now that she can barely talk, she makes sure that every time she does, she says exactly what she feels about someone. I don't know how much time she has left, with this disease, noone does, but I know that we are going to make the best of every moment. There are so many resources available to help you and your dad. Please take advantage of them all. Prayer to you.
Laura

 

[CindyM]

Welcome to the forums, Amanda. I can't sau enough about the warm and caring people around here. Sorry to hear about your Dad but glad you decided to join us. Cordially, Cindy

 

[GigiDi]

Hi, Amanda.

First of all, i am so sorry to hear of your dad's diagnosis. i am new to this forum myself, and i'd like to say that what you are doing for your father is AMAZING, and although it will be exhausting and trying at times, looking back you will never regret a moment of it. when i found out about my mom, i was away at college and had never even heard of this disease before! i had no idea what it was (i feel like i still don't!) and had so many questions... as a result, i almost didn't believe it and was completely in denial almost ignoring it until more symptoms began to show. i thought it was something that would eventually go away.... i was about 20 at the time... and have younger siblings. i am 24 now and mom passed away this dec 28th after a 5 year battle with als... 4 since diagnosis.

if you ever want to vent, or have any questions- if i can help you in any way, please feel free... i wish i had found this forum earlier. despite all the family & friends, i was very much alone with all of this & it would have helped to be using this forum from the very beginning.


love & cheers,
gigi

 

[thelma313]

Hi Amanda

I too understand exactly what you are going through. My dad was diagnosed in August 08 and I literally felt like someone had punched me in the stomach when I heard the words "Lou Gehrig's Disease." I had been researching his symptoms (he has bulbar onset) and had come across ALS but totally dismissed it, never even entertaining the possibility that my father could be afflicted with such a disorder. The diagnosis was a complete shock and quite frankly still is. I sometimes still don't believe it and am often overcome with sadness which I try to hide from my dad. I don't know why, but some of us are meant to live through the extreme experience that is ALS. Why this disease even exists is a mystery but one thing is for sure, it makes you really understand what the bond between child and parent, husband and wife, brothers and sisters really is all about and how deeply love can be felt. Maybe you will find that however much it hurts, the diagnosis can also instigate moments of total love and sharing. What you are doing for your Dad is a beautiful thing. It is bittersweet, I know, but time is precious. Luckily love is timeless.

 

[brooksea]

ditto thelma!

 

[amanda55]

Thank you all so much for sharing your stories! It is so nice to know that even though this disease is rare, there is so much support! My father as of now has elected to not have anything like a feeding tube or any breathing devices. He will be using a wheelchair, we are actually in the process of finding out how to get one.

Me, my husband, and my little boy are moving back home tomorrow. It seems so strange. We will be living with my husband's parents and trying to re-adjust and make friends again in the area. I feel like there is so much I want to say to my dad, about how much he means to me and how much I love him, I was wondering how you all went about that? We are a very affectionate family, and are always hugging and saying I love you, but I wanted to go above and beyond that while I can and he can talk back to me.

I was thinking about writing everything down and reading it to him. That way, I can make sure I say everything and if I get too emotional I can just read and not forget anything.

Again, thank you all for your support and kindness and God Bless you all.

 

[perplexed]

Amanda, you're great.

Hi Amanda,
I want to say I think you and your family are great, and that they are lucky to have you. Everything you write is so normal to be feeling and I think it helps to know that everyone on this forum understands what it is to be sad and have to be centred for your family at the same time. I've been crying a lot in the bathroom and hopeful at other times - no telling when one or the other will come over you.

Dealing with changes we never asked for is extremely draining so you need to take care of yourself.

Thelma - I'm also in Montreal.
E.

 

[MtPockets]

Please, everyone, talk to your loved ones about your feelings while they can talk back.
One thing I regret is that my children will not sit and talk to me about this disease ALS. They are still in denial and refuse to discuss the details of what I am going through. That hurts almost as much as the disease.
There will come a time when it is too late to say the things that were on your heart, the things you cried in secret about. Get them out now.
I know as a victim of this disease I would want to hear and talk about anything and everything.
When it is past, you will have no regrets, IF you take the time to speak out now.

 

[GigiDi]

Thank you all so much for sharing your stories! It is so nice to know that even though this disease is rare, there is so much support! My father as of now has elected to not have anything like a feeding tube or any breathing devices. He will be using a wheelchair, we are actually in the process of finding out how to get one.

Me, my husband, and my little boy are moving back home tomorrow. It seems so strange. We will be living with my husband's parents and trying to re-adjust and make friends again in the area. I feel like there is so much I want to say to my dad, about how much he means to me and how much I love him, I was wondering how you all went about that? We are a very affectionate family, and are always hugging and saying I love you, but I wanted to go above and beyond that while I can and he can talk back to me.

I was thinking about writing everything down and reading it to him. That way, I can make sure I say everything and if I get too emotional I can just read and not forget anything.

Again, thank you all for your support and kindness and God Bless you all.

my mom also elected to not have any sort of feeding tube or breathing devices... so she could stay (what she perceived to be) as "normal" as she could... i don't think there is any right or wrong decision regarding that but toward the end she wasnt granted the option of this sort of help because she was too weak. this brought out the strength in my father, family, & friends because there was always someone with her giving her some food, which was one of the last good things she valued & was able to enjoy. i'm a chef on a boat, and i was able to come home for a bit & cook wonderful meals for my family & dad mashed it all up and fed it to her. i am so happy i was able to provide her with that pleasure... it really is the small things... it also added to the stress levels because dad was always fussing about how little calories she was actually consuming... i dunno... everyone makes the choice that is exactly right for them. it is going to be surreal for a while.

some patients lose their speech right away and others have it to the end. everyone is different. mom lost hers about halfway through and eloquently operated her dynavox until the last week she was with us... but her mind was as sharp as ever- as your fathers will be as well so he will be there to listen whether or not he can speak or not. something that bothered me was that people came in and talked to my mom like she was a toddler... or a 100 year old sick person with bad hearing... despite this, i told my mom everything i was thinking and everything i was feeling just as i always had. i let her know every adventure i went on, and spared no details lol... and i know she loved it. she loved being the person i came to and could confess everything to. we kept our tight bond all the way until the end. i guess the best advice i can give is to not treat your dad too differently.... cherish the moments more... a sense of normalcy will be comforting to him and you.

we've had an outpouring of friends and family who were with us every step of the way but i still felt like they never really knew... until yesterday a friend of the family whose husband passed away of als 3 years ago came over and it felt like she just "gets it"... so if you ever need to vent or have something to share, my ears are wide open

cheers
gigi

 

[thelma313]

Capt. Al, thank you so much for sharing that. It is invaluable advice and I will definitely act on it. My dad is having more and more trouble with his speech.

Perplexed, any update on your husband? Have you seen any neuros here in Montreal? My dad loves his neurologist. Her name is Dr Souchon and she is incredibly kind.

Amanda, I think your idea of writing everything down and then sharing it with your dad is a very good one.